Who Am I?

This blog is written using my experiences of living with my own bvFTD and of being a caregiver for three family members who had FTD and my husband who died of Alzheimer’s Disease. I have no medical degree. I research subjects and attempt to be totally accurate. However, I do have bvFTD and can make unintentional errors. I do not suggest you make health decisions based on this blog without first discussing it with your, or your loved one’s, doctor.

Who Am I? That is certainly a loaded question. A mother? A sister? A jerk? An expert in FTD? What exactly is an expert? "noun - a person who has a comprehensive and

 authoritative knowledge of a particular area."

If I only use the first part, I would agree that I am somewhat of an expert but only to the point of dealing with the disease of FTD for 50+ years. In case you don't know me, it started with my grandmother when I was in my teens. I helped care for her for a lot of years. Then, my mother whom I cared for her from early in her disease until she died. Then, the same for my favorite aunt. By the time she was diagnosed, I already had been as well.

If I keep going, though, to the second part of the definition, "authoritative knowledge", NO! to the "n'th" degree! I am not an expert.

Who am I? I am someone who has had experience with FTD for many years... as a caregiver and, now, as one who has the disease. Unless they have decided that just hanging around doctors or knowledge of medical terminology is a medical education, I am no authority.

When I answer the questions of others about FTD, my answers are from my experience with family members and the knowledge I have developed from reading about it. That is rather dangerous because, as we ALL know, no two cases of FTD are the same and a little knowledge about something doesn't make you an expert. 

Answering a question about FTD? I am okay with that as long as you don't ask for medical answers. If I answer based on my own experience, that is reliable.  BUT... no case of FTD I have seen can be the same as yours.

For instance, I can tell you of medications that have helped me through these years, but not which meds that you "need" to take. I can even tell you what meds others with FTD have told me work(ed) for them. Please, never start taking a medication, prescription or otherwise without discussing it with your doctor first. You can tell the doctor you that someone has told of something that has helped them and ask if it could be appropriate for you.  I suggest you never go into a doctor's office and tell them what drug you want or need. That is one of the quickest ways for your doctor to decide he will no longer treat you.

This applies to over the counter meds as well. They are still medication and can affect other medical conditions or interfere with the effects other meds.

This applies to herbal remedies also. Of course, the first that comes to mind is marijuana, whether medical or recreational. I am not opposed to the use of marijuana. In fact, many with FTD (and other diseases) have told me that it has greatly helped. BUT, it also falls under the same umbrella as over-the-counter medications. Using it can result in huge issues if it interferes with or affects any other medications. I would be remiss if I didn't suggest you consult your doctor, not for permission, but to ensure it will not negatively impact any other medications you are taking.

When it comes to FTD, there are no "cookie cutter" solutions. If you notice me, or any other person, giving the same exact answer to similar questions, please consider what I have said here. I would not accept a doctor doing that to me, so I would not accept it from anyone else either.

In fact, if you go to more than one doctor, please make sure you tell each one about all of your medications and medical conditions. Just because a medication helps one issue you are dealing with, it can have the reverse effect on something else.

I go back to "who am I?" I am someone who can share what I have seen, or heard from others, of things that have helped. If a caregiver tells me their loved one keeps picking at their arms and legs, I can tell them my experience of tiny little tingles, especially on the arms and legs and are almost like small electrical impulses. I can tell them that these sensations often make me feel like little bugs are crawling on me and that I am constantly looking for tiny critters on my skin.

Even though I know it is most likely from my FTD, I find myself pushing up my sleeves and pulling up my pant legs to make sure there is nothing there. Someone can tell me not to a hundred times a day, but I still will look. I figure sometime I will embarrass my daughter by looking for "bugs" in all the wrong places.

Telling them about my sensations is one thing, but I should not be telling them absolutely that this is what their loved one is feeling. I could tell them what has helped me (be it prescription meds, OTC meds or herbal meds) but I am not a medical expert who should tell them, absolutely, you need to do the same as I do.

By the way, I have not found anything that helps beyond a momentary relief. I have knowledge of the problem. I do not have authority to tell anyone else what they have or what they need to do about it.

I am not sure what I am, but I am certainly not an expert.